See Alike in...

Alike App

Browser

The Alike Team

411d

Which word best describes how you feel combating a chronic illness?

Top reply
    • EmeraldMosaic

      192d

      Acceptance.

    • EmeraldMosaic

      192d

      Acceptance.

    • Alex1325

      194d

      Tired, burnt out, in pain, wishing there was an unsubscribe button to fibromylagia. I don't remember signing upto this shit and if I did I was intoxicated and coerced. Fed up with the medical system. Sick of having half a chemist in my house. Wishing that I could do things I used to like walking up stairs or go for an hour walk. Fearful of what else this journey has install for me. Sick of waiting in hospitals just to be handed a Tylenol and sent home. Sick of doctors telling me that drinking more water, eating healthier or exercising more will cure me. About ready to rip out my hips as I don't need this much pain.

    • DragonflyHKD

      199d

      Frustrated. I have one known autoimmune disorder affecting my esophagus. Rheumatologist believes I have another affecting basically every system in my body but can't pin down a diagnosis. Another doc told me I probably have something that hasn't fully presented itself yet so I'm waiting and getting sicker in the meantime. 🤷‍♀️ Last time I counted my meds and supplements, I was up to 35. Plus seeing a dozen specialists all the time for a wide variety of symptoms. Managing my health is a full time job in itself. Trying to keep going and not give up.

    • dizzydoowhereru

      199d

      I also feel so tired and then like I'm lazy for not getting stuff done. But I can't help that I am in pain and unmotivated some days! So then it's frustrating

    • verda

      210d

      28 yrs in pain, my strong will and non understanding husband kept me moving. Raised three kids still taking care of our special needs grown daughter. Fostered and adopted two kids now early teens and had to homeschool them. I just feel guilty lying down, stsying in bed. Get mad at myself. It is and has been stupid. Just had both shoulders replaced. I am suffering but evenings now, I am just done.

    • mattevo

      211d

      😥

    • Junky

      219d

      All of the above..? I'm mostly just... tired. Hopeless, i guess? Like, i feel like my world is shattered. I'm just a kid, I want a normal life.

    • Yumeno

      223d

      Definitely frustrating but there are times when I feel more optimistic and hopeful than others. Some of my chronic conditions have gotten a bit easier to manage even if they can't completely be cured, I've gotten better at treating my symptoms, which does give me hope for some of my other conditions. But I admit there are some I've been dealing with for so long where it's easy to see a little improvement and then feel like I'm going through another setback... it can be disheartening but all I can do is keep trying my best

    • Redvelninja

      223d

      Honestly I feel contempt about it. Like it's a mixture between ok and just like I got robbed out of a normal life and a normal family. It's very complex and kind of hard to explain but that's basically how I feel about it.

    • Bijoux_bean22

      284d

      I refuse to use words like combat! It can be detrimental to emotional/ mental health and does not serve any legit purpose. If the question is how to I feel managing my disabilities, I would say burnt out and frustrated with a bit of sadness.

    • hmmmm

      286d

      all of those things, mixed together in different combinations at different times

    • jjet

      288d

      Burnout. Change of meds number 28.

    • Aiya_the_ill

      288d

      Honestly all of them. It's often overwhelming. I'm grateful for what my body can do but I'm also missing my life before my health plummeted. I'm happy that I have many different treatments available, but I'm frustrated every time they fail. It's feeling everything at once, and then its just numb.

    • LunaNova

      340d

      Guilty

    • ClayBrooks

      364d

      All of the above. I have a diagnosis amd there is a way to treat the route of my condition but it developed so much that even if i get rid of tue route I'm left with 90% of the problems still. The cfs medical team cant help as Im on too much medicine for anything they say to help. The pain team won't see me as I have fatigue and need to see the fatigue team and even when i say I can't see cfs team they say they cant prescribe me much as I'm on warfarin which fucks with evrything. I can't get disability Benifits as I live with my parents and have a roof over my head and my mum has a good job with good pay and my condition isnt "bad" enough (I can get out of bed when needed, dress myself, make myself simple meals, go to the toilet on my own etc. But I can't get a job or move out.) Gp cant do much more tyan shuffle me arround the nhs system of pain, cfs, and any other team they can fucking think off all while saying "sorry i cant do anything else" and I fucking hate having to go in circles all the time. I'm tired, Angry and numb to it all and I just gotta deal with all the mess

      • Ash.G

        211d

        @ClayBrooks pretty much like what it is in Ontario. I couldn't get onto DSO because they only recognize certain types of developmental disabilities even though I have a developmental disability. They don't recognize my disability.

    • TattsCatsNaps

      364d

      I know it’s weird to say I feel optimistic- but getting official diagnosis and confirmation was really what helped me understand myself so much better. It gave me answers and steps I could take to understand myself better ❤️

    • KellyKC

      364d

      One word description simply isn’t enough.

    • Tash19

      388d

      A roller coaster of things. One word is too simple for something that is difficult and takes over your life and most of the time your identity.

    • Darren

      388d

      Trapped is definitely a good one

    • chocolatetruffle

      390d

      Miserable

      • Bre19

        210d

        @chocolatetruffle same

    • AngieBear1025

      390d

      I was born with birth defects and I'm tired. I'm tired of dealing with the constant infections from my mother abusing drugs when she was pregnant with me. I'm tired of taking antibiotics and having my bodies bacteria build resistance against them. I just want to live a life infection free for once!!!

    • VenusDeMilo

      393d

      Frustrated

    • bridgiebee

      393d

      Tired? More like EXHAUSTED

    • crafty_spoony

      393d

      At the end of my tether to be honest.

    • Pain_Warrior89

      393d

      I think it starts of as optimistic then angry then frustrated cus nothings being done then that goes to just tired and numb. I used to see doctors as people who would always try and help you, I've been laughed at I've been told if it was that bad most wud of killed themselves by now. Now if I go with anything e.g atm I have vertigo (so I'm told) but he will say "so ure fibro etc has gone".. no this is on top of it. I dont do into a doctor's appointment with ant kind of hope

    • purplecow

      394d

      All the options except optimistic and neutral

    • 1ofmany

      394d

      Overwhelmed

    • DodoWaddle

      398d

      I mostly feel neutral. It's been like this so long, it has become my normal. It's barely a fight. It's like living in a haunted house but you know every ghost and every creaky floorboard. Sure, some ghosts still like to mess with you but it's like, "not again Barry" rather than horror I wouldn't describe it as a combat, but a slog

    • Starsunmoon

      398d

      Invisible. People always tell me I look so healthy and they don’t believe I am sick, or I couldn’t be sick because of my capabilities, but I’m so frustrated and tired of being overlooked. I’m struggling and I want to scream I’m not ok more than anything, I want people to understand, but at the same time I don’t think I could stand pity either

      • Bre19

        222d

        @Starsunmoon same

      • KitKat1450

        283d

        @Starsunmoon feel this 💯 Thanks for sharing🙏🏻

    • Twinkle54

      403d

      I do what my doctor says, but I'm willing to try new things and think outside the box, so to speak.

    • IceGoddess

      403d

      Draining was the top word for me

    • jam064

      403d

      I was angry for a long, long time. Now I've accepted it and just feel neutral. It is what it is and it's not going to change.

    • EmzPow

      404d

      All of the above and totally broken... 😥😢

    • Apple59

      404d

      Hi guys did someone tried chromium picolonate? Tried them once for a month and they worked great to the point my GP asked to stop having the medications i had but after two months my glucose levels went up . Tried them for longer to no avail!!!!

    • misty8811

      404d

      All of the above tbh its really really hard to get any good advice or find people who suffer the same to talk to and try to help each other

    • Betta

      406d

      I put optimistic but I am a Stoic and likely manic

    • CraftyMama

      406d

      Frustrated because when you have several chronic conditions a treatment used for one may make the others worse so its a constant pick your battles approach to healthcare

    • chesilchick

      408d

      I get really frustrated as I can't do the things I used to, I fall easily aswell which don't help, I'm constantly exhausted and trying to keep on top of the house is impossible,

    • Bre19

      408d

      Feeling like there is no way out and I'm trapped

      • JessyP

        222d

        @Bre19 definitely the trapped feeling is what I get, feeling trapped in it all

      • chocolatetruffle

        390d

        @Bre19 I feel like this a lot too. I feel trapped by the pain and other horrible symptoms, and it feels terrible

    • UpendedLife

      410d

      Frustrated, angry, scared and everything inbetween. It’s upended my life. Stopped me from doing what I was planning to do. One year ago my life changed

    • LynnKenzie

      410d

      Alone, so utterly alone

    • Starcycle

      410d

      Honestly I find a kind of hope in my illness. What's tiring is everyone else. But that's not my body's fault. Not my fault. It's trying it's best and where it can't I help it as much as I can. There's a kind of strange beauty to that, you know?

      • TattsCatsNaps

        364d

        @Starcycle I feel this on a deep level 💕 I agree that you can only do what you can do - it’s the weight of every body else’s expectations that can make shit hard.

      • Starsunmoon

        398d

        @Starcycle I needed this reminder. All of us on here are fighting against bodies that are just trying to do their best for us but they can’t. It’s a very hard thing to try and love your body when it causes you so much pain

      • Starcycle

        410d

        @Starcycle Not to say I don't get frustrated at all, of course.

    • Denotchka

      410d

      I want out of Fresenius and out of dialysis period. I feel like I’m being held hostage medically.

    • serendi

      410d

      Honestly, it depends on which one it is and why it’s flaring so badly. Sometimes I’m just frustrated as heck. Sometimes I’m just exhausted. Sometimes I feel hopeless. Sometimes it’s one and changes into another.

    • Olivebutter2236

      410d

      Helpless and Hopeless

      • Bre19

        286d

        @Olivebutter2236 yes

    • kateafranklin

      411d

      sad and upset. Angry. Lonely. scared. Anxious. Tired. Burnt out. And a little bit of optimism amidst the negative emotions

      • Bre19

        222d

        @kateafranklin felt

    • AnimalBoy

      411d

      Tired definitely could sum it up but it's so much more than that and there's a sad/hopelessness to it. It's hard and I dont really know how else to describe it.

    • LadyBrownharth

      411d

      I'm frustrated and I'm tired. I do so much to limit my pain and it's time consuming and boring and seems like it doesn't help [until I stop then I realize how much pain it did save me from] a feel trapped in a routine I hate but can't survive without. I'm not free to do or eat what I want and I hate not being able to get help with it. I'm tired of doctors acting like I'm not in enough pain because I'm not curled up in ball bawling or flopping around crying like a toddler. They don't believe I'm up at 6:30 stretching before breakfast walking after each meal and stretching before bed just so I'm not suffering. Eating an Anti inflammation diet that also cover my other health concerns to the point that I now hate food because I'm overweight. They think I just don't do enough, but I'm doing all I can. I need help but I can't convince them I'm even in pain.

      • Bre19

        192d

        @LadyBrownharth felt this deeply

      • Starsunmoon

        398d

        @LadyBrownharth I also find it so tiring constantly having how much pain you are in questioned. I have broken bones and had injuries of that level 10 pain, and they are simply nothing compared to the toll of being at a 4/5/6 pain daily and not being seen because it’s ‘not bad enough’

      • LadyBrownharth

        411d

        @LadyBrownharth And I really make amazingly good tasting and healthy foods that people love... except me because I'm spiteful that it's perfect but doesn't help... that much. Depressing maximus.

    • IAmTired247

      411d

      Tired and frustrated. There's a reason for my name

      • Bre19

        286d

        @IAmTired247 me too

    • KhronicKoder

      411d

      All of the above? 😐

      10

    • tigerbear

      411d

      Hopeless.

    • AstraDragon

      411d

      Alienated It feels like those who see me at my worst run and never look back 😥

      • Ash.G

        211d

        @AstraDragon same here

      • JessyP

        222d

        @AstraDragon definitely

      • Bre19

        286d

        @AstraDragon yes same

    • DitsyDiabetic

      411d

      It’s not just tired…. It’s a constant feeling of burnout from trying to act normal….

      26

      • val09

        199d

        @DitsyDiabetic same

      • JessyP

        222d

        @DitsyDiabetic this pretty much sums me up. I feel like my family are far too pushy with me about doing ‘normal’ activities. I can’t even get out the house much at the moment because I’m constantly tired and I am honestly working my hardest to be like normal but I seem to be like in this never ending web of issues

      • Bre19

        288d

        @DitsyDiabetic I felt this especially when it comes to having depression and anxiety it's a constant battle

      • mrsnic45

        411d

        @DitsyDiabetic absolutely, couldn't agree more. Especially the 'invisible' illnesses.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion